On March 4 and 5, 2014, nearly 170 advocates, including a record number of self-advocates, braved the winter storm for the 11th annual National Fragile X Advocacy Day (NFXFAD). Due to the incoming snow, flights were cancelled left and right. Passengers were stranded at airports, others struggled to rebook their flights.
Despite weather conditions, we knew this was our chance to make a statement: With a 160 meetings scheduled, not even Mother Nature could stop us from delivering our message!
Longtime advocate Sheri Dickerson, from Mississippi, spent several hours on the phone getting her flights rescheduled, and after all the trouble she went through, her phone’s SIM card was coincidentally switched off the day of her flights. Her son Zac, who is living with Fragile X syndrome, was with her for the trip. Sheri’s main concern was that he would not be able to handle the stress. But it turned out that the opposite would happen. “Zac did perfectly. I was the one having a meltdown,” said Sheri.
Tammy and Andy Selinger, (CSN) leaders from Connecticut, spent hours on the phone past midnight with airline customer service agents. Regardless of the wait time, the Selingers were committed to making it to Advocacy Day.
Even luggage had a hard time getting to D.C. Tim Geels, a CSN leader from South Dakota, arrived on time, however his bags went from city to city without him, forcing him to buy a new suit. But, like our many dedicated advocates, once Tim arrived in D.C., he dutifully presented the case for Fragile X to his representatives on the Hill.
This year, our advocates asked for three things:
- Support our appropriations requests which will:
- Maintain dedicated support for the CDC’s national Fragile X public health program and continue to support the FXCRC.
- Create greater efficiency and synergy among the FX and autism research tracks at NIH, CDC and DOD to accelerate translational research toward a better understanding and more effective treatments for both conditions.
- Support continued inclusion of Fragile X-associated Disorders among the list of eligible health care conditions for targeted biomedical research funding through the U.S. Department of Peer Reviewed Medical Research Program.
- Hold a hearing on the disparity between Fragile X and autism funding before House Energy and Commerce Committee.
- Help us pass the ABLE Act. The ABLE Act will allow families to set funds aside in a tax-advantaged savings account that allows the funds to be withdrawn to cover costs of health care, employment support, housing, transportation, the purchase of technology and lifelong education.
The feedback from the Members of Congress (MOC) and aides that Tim met with was overwhelmingly positive, and at the end of the day that same message was repeated by many other advocates. We’re already hearing back from our MOCs with compliments on our presentation and passion!
The ABLE Act, specifically, has gained much traction in Congress with more than 60 senators and 340 representatives supporting it. A letter is currently being circulated by Senators Robert P. Casey and Richard Burr asking for more of their peers to sign on. In an excerpt from the letter, “There is no other bill in U.S. Congress that has as much bipartisan, bicameral support as the ABLE Act.”
This year we were pleased to report that NFXFAD received coverage on Fox 5 News WTTG Washington, D.C. Holly Usrey-Roos, the NFXF CSN Program Coordinator, and Nancy and Nick Hertzig, an advocate and self advocate, respectively, were interviewed by Allison Seymour, anchor, at Fox 5 News.
Every year that we visit Capitol Hill, we’re continuing to build relationships with our representatives and in turn they’ve become more and more familiar with Fragile X. But Advocacy Day is not only a time for our friends in Washington to become acquainted with us. It is also a chance for family members impacted by Fragile X to truly take back control of their lives after Fragile X entered their world.
That feeling of empowerment, and the hope that advocacy brings, is what drove our advocates to D.C. despite all the setbacks from the snow day.
As the Selingers told us, “The one lesson you can take away from this is: ‘Determination.’ When a Fragile X mother is determined to do something, she gets it done.”